Monday, October 6, 2014

September - Neurology, Physiatry, Neuro Psychology

It has been a busy month!  In addition to starting school and getting a new brace it was time to go back to the neurologist, back to the physiatrist and back to the neuro psychologist.

Dr. Lavenstein was happy to see how well Reagan was doing.  He said her medication level is

sufficient for now and we should keep doing what we're doing.  We don't need to go back until March!

We also visited Dr. Morozova, Reagan's physiatrist.  Our big question was about the new SMO.  She agreed that the toe plate was too long so she asked that we go back to Nascott (the orthotist in DC) to have it trimmed back.  She also said we could have the sides shortened since Reagan doesn't really need the ankle support.  Although this is all great news…that means the new shoes we bought will now be too big.  It also means another visit to DC which is tough since Shawn is only there on Wednesdays and it is IMPOSSIBLE to get an appointment on his schedule.  Needless to say, she said she's not ready to eliminate the brace, but with how she looks now we may consider that when we come back to see her in February.  We also talked about constraint therapy.  She said research indicates this methodology is best for children who need to get their brain to realize they have an affected side.  Given Reagan is so high functioning now she thinks we really do need to consider a bi-manual program instead (intense therapy with two hands).  So off we go doing some research…

Reagan's private OT mentioned last week she feels Reagan has increased tone (tightness) in her left hand. So I also asked Dr. Morozova whether she thinks we should consider Botox again.  Although I am not a big fan of Botox (and having to put Reagan under anesthesia) we saw such amazing improvement in her supination that I wanted to see what her opinion is.  I was very happy to hear she doesn't think we should consider it for Reagan at this time.  It isn't uncommon to see increased tone during periods of growth spurts but the goal is to stretch regularly to try to counteract the effects.

Lastly, Cole had his 4 year neuro psych evaluation with Fairfax Neonatal Associates.  Although we had a private evaluation last year, this data is used for longitudinal studies that they do about premature babies born in the NICU. Overall the evaluation went well - it is about 4 hours so he is rather tired by the end.  But we look forward to comparing the results to the evaluation we did last year and seeing the areas where he's making progress.

In addition to keeping up with weekly OT, biweekly PT (for Reagan), doctor appointments and school we have gotten out to play a little.  We've been ATV/dirt biking a few times.  Reagan still loves her bike and riding the ATV with Dad.  The big breakthrough is that Cole is now riding the dirt bike and squealing WHOOO HOOO.  He doesn't have the strength to keep the throttle activated, but he's going slow enough that Dad can walk next to him and hold it.  And of course there's always the obligatory trip on the tractor to get a big smile.

Friday, August 29, 2014

Reagan's big move from an AFO to SMO

We wrapped up UVA with an assessment last Friday and Reagan did a great job.  Cole also had therapy with Alan Friday.  He worked more with the scissors and "made a mess" cutting paper.  We were lucky enough to be able to take the scissors home and I'm looking forward to trying some of these activities with him.  Cole had a lot of fun playing games and then we hit the road.  We were all very excited to be home for the weekend without thinking about getting laundry done in time to repack and leave again the following week.

We had a great weekend and fun last week of summer.  Reagan had several play dates and we spent a lot of quality time together.  The week was also busy with Back to School Night and Open House for school.  Reagan will be in Mrs. May's Kindergarten class with Mrs. Carr and Cole will be in Ms. Carolann's class with Ms. China.  Although both kids are excited, I'm sure the transition next week will take some adjustment.  Luckily I have worked it out for Reagan to take the bus with Cole to school.  If you remember, he still had a little trouble getting on the bus in the morning. They are now fighting over whether or not they will sit together.  We'll see who wins that one!

We were back to therapy this week at Children's Therapy Center.  It will be good to get back in the regular routine.  We also had an appointment to FINALLY pick up Reagan's new brace at Nascott Orthotics and Prosthetics at National Rehabilitation Hospital (NRH).  There was a discussion about what brace to get next and the Physiatrist ordered a Supra-Malleolar Orthosis (SMO) instead of the Cascades 3.5 AFO we had last time.  The advantage is that she will have more range of motion allowing her to increase her muscle strength and possibly build up her calf muscle (so they are equal on both legs).  The disadvantage is that the brace does not prevent the toe drop.  I am hopeful that the brace will still provide the stability she needs but give a little more flexibility.  

I will say, even after 5 years and 6 braces it's still a fight to get her to want to wear it.  We were on our way home from the hospital today and Reagan had taken her shoes off in the car and had the brace in her hand.  She said, "hey mom, it's like I have my very own glass slipper just like Cinderella. I wish I had one for my right foot too."  I could have cried.  I was so excited to think that she is hopefully going to wear this one without a fight.  Not to mention I love the butterflies. 

Of course new brace means new shoes for Reagan…   which is worse for me than jean shopping and bathing suit shopping COMBINED.  We stopped at the Tyson's Nordstrom on the way home thinking they would have a larger selection.  The bad news is that we bought the only pair that fit the brace so once again she didn't get to "pick" what shoes she wanted to buy.  The other bad news is that they no longer carry the Tsukioshi brand that have worked so well in the past.  The good news is that she liked the one pair they had (in both sizes since she needs a bigger size on the left to accommodate the brace) and she is convinced these new running shoes make her run faster….which they probably do!  Win - win in my book!

Thursday, August 21, 2014

UVA Graduation AND a big anniversary for Reagan!

WAHOO! And just like that we're done and Reagan has graduated from UVA constraint therapy for the third time! Ok, who am I kidding….I feel like we've been here forever and we are all exhausted.  We started with a quick trip to the Bounce-n-Play to run around before heading to the hospital at 1pm.  Emily took Cole to the Downtown Mall to visit the outdoor carousel while I sat and waited for Reagan.

Reagan played several games today to include one where she had to practice making a fist and playing Eeny, Meeny, Miny, Mo with the cards on the table.  Although making a fist isn't difficult, she had to supinate her wrist to hit the table with her fist as you can see Ms. Sue doing.  With the same game (Funny faces) she had to pick the cards up and stack them.  Also a very tough task that requires supination and wrist extension.

Since today was her last day the focus was on explaining the skills she should be taking home and practicing.  A big focus was on "floating lefty" and the fact that lefty needs to help and not just "sit around on vacation".  I know it sounds harsh, but lefty often gets forgotten for tasks that don't necessarily NEED two hands but that could be a lot EASIER if two hands were used.

There are four areas of strengthening that we have as homework from this program.  I have a two page program to follow at home, but here are the highlights:

  • Wrist Extension: Place forearm on table so hand hangs off the table, palm down.  We have Reagan lift a 1 pound weight up as far as she can.  Let it drop as far as she can between lifts.  We are supposed to do 5 sets of 20 every other day.  Our focus should be to encourage her to lift her hand/wrist higher as she gets stronger.
  • Finger Strength: With wrist extended to at least neutral, squeeze a squishy ball or play doh or hold onto a top or toy against some resistance.  Try to complete 5 sets of 20 every other day.
  • Shoulder flexion: Raise arm fully above head to reach for objects.  Aim for 5 sets of 20 every other day.
  • Weight bearing: Yoga continues to be a great way to do weight bearing through her arm with an extended wrist and elbow. It's also an excellent overall strengthening activity.
As far as future sessions here at UVA Children's Hospital, we will come back in 6 months and again in a year for another assessment to meet the requirements of the study.  Unfortunately…which I didn't realize…we can't do ANY constraint therapy for a year from the day we finish this session (today).  That means she won't be able to do CIT next summer unless she misses school..which I am not willing to do.  I spoke with Sue and she would really like to see Reagan participate in electrical stimulation for her hand.  We've considered this for her leg, but haven't discussed it for her hand.  Unfortunately, we need an "intensive" program (multiple hours for multiple days) in order to justify the drive to Charlottesville.  Needless to say we will be investigating our options for next summer and I'm sure there will be more to come about that!

And although therapy is done, Reagan is scheduled for a four hour assessment tomorrow similar to the one she had on our first day.  We are hoping it will be just as short as the first one too!  Luckily I was able to schedule Cole for therapy tomorrow during Reagan's assessment so we'll get everything done in the morning and head home.  He has been very receptive to the therapists here so I'm excited he has been able to "play" too.  Every day when Reagan goes to therapy he says, "do I get to go too?"  Glad he likes it more than Reagan did at his age!

As I think about the last month and how much progress we've made it seems fitting that today is the 5 year anniversary of Reagan's brain surgery.
I remember this day like it was yesterday.  I was scared to death watching my 2 month old get wheeled away.  I had no idea how hard it would be to see her intubated (tube down her throat) and lying on a hospital bed and not be able to pick her up and tell her it was all going to be ok….because we had no idea if it was going to be ok.  And I had no idea when the surgeon said "she may be a little weaker on her left side" that she meant Reagan would have Cerebral Palsy and would face years of grueling therapy.  I think about the fact that Reagan has been going to weekly and eventually twice weekly therapy sessions since she was 3 months old.  I think about how she used to fight the therapist.  She would cry.  I would cry.  And I would doubt…I would doubt whether all this time and emotional pain was going to help her or ever make a difference.

But shortly after our first constraint program in March 2013 I have not doubted for ONE DAY that the time, the tears, and the fights that we have endured together are worth EVERYTHING for the amazing progress that we have seen.  I went from thinking a weak left hand meant it would not be as strong….to realizing it meant that it may never work.  But when I look at where she was 5 years ago today to where she is now, I am literally blown away at the miracle of the human brain and the power of persistence. I feel so blessed to be her mom….

Wednesday, August 20, 2014

UVA Constraint Therapy ~ Day 11

We had a relaxing morning since Cole started therapy at 11am.  Cole spent more time cutting and playing games.  Unfortunately Mr. Alan said he was much more distractible today, but they had a good session regardless.  After his therapy he and I came back to the hotel room and had a quick lunch with Reagan and Emily before heading back to the hospital at 1pm for Reagan's therapy.  It was SO nice having Emily here again this week so I was able to take just one at a time to their appointments.  Reagan spent more time building forts and making a "cranky."  She started the construction yesterday by painting the box, sprinkling Pixie dust, cutting the story paper and drawing the story of Tinkerbell's Adventure.

Well it was bound to happen eventually.  She had a tough day at therapy.  Unfortunately she struggled a little more and left extremely cranky….no pun intended.  You would think being without the splint would make this week EASIER, but Ms. Sue said she was really pushing Reagan today.  For example, if she picked anything up without the wrist extension she would make her put it down and try again.

Today she rolled the story paper onto sticks and inserted them into the box to CRANK the story.  What a cute idea!  Reagan even made a little handle on the left side to hold with her left hand!  She's very proud of her "cranky" and can't WAIT to read the story to her grand parents and show them how the story unravels as you crank the sticks.

After therapy today we decided to take a trip to get Kohr's Bros Frozen Custard.  It was amazing!  Unfortunately Cole slept through the entire visit including the ice cream AND the carousel!  But he was super cranky too so he needed the rest.  After ice cream we took the kids to the Fashion Square Mall to play at the indoor playground.  They played, met a bunch of new friends, we had dinner, and headed back to the hotel in a pouring down rain storm to get to bed and do it all again tomorrow! As hard as this day was, I was the lucky mom who got to put two kids to bed who were all smiles after bath time.  And those smiles are what make everything all better….